IVIG reactions/Aseptic meningitis

[Guest guest]

Hi,

I don't have access to my old messages right now, but I was recently

given some info that might help a few of the families here.

I hope I get everyone's name correct -- in one family, the mom is Tina

and her son is Mike (a teenager), I think. This is also for 's mom,

, because I remember you asked about how people know they have

aseptic meningitis from IVIG rather than something else. And I didn't

know if it might help with 's reactions, too. Sue W., I know

your boys are off IVIG, but I thought of you with this, as well, in case

you ever have to put them back on IVIG. This'll be sort of long-winded

(when am I not?!), but hopefully it'll have something useful in here somewhere!

Tina, you recently wrote in saying you weren't sure what to do about the

IVIG situation, because of your son's massive reactions.... I have never

had predicable reactions to my IVIG until three months ago (in fact,

always considered myself very lucky!), and now each month for the last

three, I've developed aseptic meningitis (103 fever, stiff neck,

photophobia, *extreme* headache, and desire to do nothing but lie down

in my dark room with no lights, no TV, no music, nothin'). I'm very

lucky that my docs are great about it -- I had my first case of this

two years ago, then one more time about a year later, and now three

times in a row. The first time, on the spinal tap, there was definitely

pleocytosis (predomantly lymphocytes), so we went through all the

precautions -- cultures, hospitalization in isolation, IV antibiotics,

etc., until the cultures came back negative. Since then, they know that

if I have these symptoms within close proximity of the IVIG, they are

okay with me staying home with pain meds, IV fluids, and my roommates

checking in on me every once in a while to make sure that I'm mostly

lucid (as lucid as you can be on IV pain meds!). We know that the

reaction tends to start almost EXACTLY 48 hours after the infusion

ends... it's sort of eerie how alike each episode has been.... so as

long as we tie it to the infusion time-wise and there are no other

symptoms, they're good about letting me handle it.

I tell you all this because my internist and I talked to my immunologist

today about how to prevent this in the future. I can only take

Gammagard because I've got anti-IgA antibodies and have anaphylaxed to

blood products with IgA in them. I've never had a " reaction " (in the

sense of an allergic or anaphylactic reaction) to Gammagard, so we are

very comfortable using it. But it also means that I have to figure out

how to prevent the aseptic meningitis, since I don't have any other

options in the way of switching brands or anything.

So I talked to the immuno, and he devised a premedication protocol,

loosely based on the way they pre-treat people for IV contrast

allergies. I used to take 50mg IV Benadryl and 50mg IV hydrocortisone,

and 1000mg Tylenol before the infusions. (These doses are based on my

body size, so they're not right for everyone, but my guess is that

Tina's son is about my size). Well, since those aren't cutting it, they

said that at 13, 7, and 1 hour before the infusion, I need to take 50mg

oral Prednisone. An hour before the infusion, I should take 150mg of

Zantac (an H2 blocker, functions as another antihistamine), 50mg IV

Benadryl, 1000mg of Tylenol. Then about halfway through, another 25mg

IV Benadryl. They said that fluids haven't been proven to help in any

scientific way, but that they wouldn't hurt, so we're going to do IV

fluids. My old infusion schedule was that I got 30g in 600ml fluid.

Started at 30ml/hr x 15min, 60mg/hr x 15min, 120ml/hr x 15min, 180ml/hr

x 15min, and 240ml/hr for the rest. It took about 3.5 hours. Now, I'm

not allowed to go over 120, and we may have to slow it down more.

Not sure what you were doing in the way of pre-meds, but thought I'd

share those tips. I won't know for another few weeks if they work, but

I'm hoping they will! , I wasn't sure if something like this

(particularly the steroids before, and the Zantac) might help avoid

hives for .

, I know you had asked about the meningitis thing, and I was really

sick at the time and couldn't write in. I know that must be terrifying

for you, since you've been through the bacterial kind before. I've also

had both bacterial meningitis and viral meningitis, as well as viral

encephalitis. I think the key is to make sure it's nothing but aseptic

meningitis the first time it happens (if it does -- my immuno's comment

is, " we know that it happens, and we know that some people tend to get

it over and over, where other people never get it at all.... but we're

not smart enough to tell you ahead of time who, and after the fact,

why. " ). There are some studies that show that people with migraines are

more likely to have the IVIG reaction, and they think it may have

something to do with surface proteins on the meninges. But I've never

had a migraine, so I don't fit into that neat little category. Anyway,

the key (in my mind, anyway) would be to react with your usual level of

caution and seriousness if it happens a first time, until you can

reassure yourself that it's only from the IVIG (which they can tell on

the LP because with bacterial, you'd expect a predominance of

neutrophils and a pussy appearance, and with viral, you'd expect a

mixture, with a predominance of lymphs and generally a pretty clear

appearance). Then if it happens again after the IVIG and follows the

predictable pattern of time, symptoms, etc, you can tell if it's related

to it, time-wise. I have a port, and I do all my meds at home, plus

accessing and dressing changes, so when this happens, my doctor calls

the homecare company, they drop off IV fluids, pain meds, and

anti-nausea meds (to go with the pain meds, since they make me puke).

It's harder to take care of at home without a port, but could be done, I

suppose. Just wanted to let you know that it's pretty easy to figure

out if it's related to the IVIG or not, because most everyone I've

spoken with about this says their reactions are very similar each time,

and then it's not something where - if IVIG induced - you *have* to go

into the hospital every time for three or four days (unless you want to

for pain meds). I'm actually two days into the aseptic meningitis thing

right now, and I'm lying in my bed with my laptop in my lap, with the

lights off and the screen brightness turned down. I have an exam later

this week, so I told myself I'd study... hmmmm... seems I've got an A in

procrastination, but at this rate, I'm going to get an F in

Endocrinology! :-)

Anyway, this turned out much longer than I had planned... hope some of

it helps someone!

Take care,